The Case of the Missing Scooper Plates

Thanks to everyone who sent medical supplies. I tried to send personal emails to all, but may have missed a few. Sorry about that! All the supplies have been really useful. Your generosity has been appreciated and I don't think I'll ever need to buy chapstick, aspirin or echinacea again. Ear plugs and florastar, on the other hand, we can never have enough.

Someone kindly bought some of these blue scooper plates this past winter but they never arrived. If you ordered them and had them sent to our address, you may want to contact the seller to see where they went missing.

Someone also bought these sandstone scooper plates and they haven't arrived either.

Can you solve these mysteries?

Ready... set...

For those of you who read Screw Bronze, you’ll know that Beth has a dream to go to Sakuracon in Seattle April 2-4th. Cheryl and I would love to make the dream come true (we want to go too!) and think with your help we can make that happen.

A few of her readers have emailed her to ask how they can help. So we thought it might be useful for everyone to see what our expenses are. I’ve also put deadlines next to items if applicable.

Convention Tickets - $150 by March 8th – Beth committed to sell books on Amazon/ebay to pay for these.

Hotel – 3 nights - $520, $30 parking – reserved! It’s Easter Weekend so we wanted to get our room before it’s too late. We’re staying at the Holiday Inn in downtown Seattle. It’s far enough away from the convention that it’s relatively quiet and will give us a good night’s sleep. It has suites and depending on the room type, free continental breakfast. It is also more reasonable than most other hotels.

Coho Ferry - round trip (Victoria – Port Angeles) - $151 – reserve ASAP! This year we need to take NDY, Beth’s power chair as she’s too weak to hold herself up all day. NDY will give her full back and head support and also has tilt and recline in case she has seizures or is too weak to stay upright. With a minor tilt she is cradled in the chair. We need to take our van as NDY won’t fit into Cheryl’s Jeep. We take the Coho ferry from Victoria to Port Angeles and then spend the night at Cheryl’s. Then we drive across the Olympic Peninsula and catch the Washington ferry to Seattle. The Coho has a limited number of reservations for each sailing and as this is Easter weekend we want reservations. The alternative is to arrive at the terminal and park the vehicle the night before and then walk/roll down the next morning several hours before the ferry leaves. This would really wear Beth out.

Gas - $60 – we’ll pick up the cheaper American gas in Port Angeles.
Washington Ferry – round trip (Bainbridge – Seattle) - $40 – need to take this ferry to get from the Olympic Peninsula to downtown Seattle.

Parking – $24/day reserved at least 30 days in advance (March 1st) at the Convention Centre = $75. This will cost about the same or less than getting a taxi that takes the three of us and NDY, Beth’s power chair. Having it at the Convention Centre means if the noise and people get too much for Beth (or Cheryl or I for that matter) we can sit in the van for a while and chill out. I need to check, but it may even let us come and go multiple times a day which would mean we could go back to the hotel for naps and return in the evening.

Food - $200 – we will buy groceries at the grocery store nearby our hotel and this will cover most of our meals. We usually have take out one night for a change.

Costume for Beth – to be determined – but it’s gotta be hot! Suggestions are welcome. One reader suggested this black lace dress with a corset bodice. Beth would also like me and Cheryl to dress up a bit. She has offered to share her hair accessories with me. We’ll see how that goes.

Spending money – Beth and Cheryl want to go back to the dealers who were selling $2 and $5 manga as well as the art books and sellers of Japanese merchandise. Last year Beth found some great gifts that she sent out over the course of the year – items (clothing, stationery, etc) with Boots the cat were really popular.

If you would like to help out, please let me know at linda.mcclung at shaw.ca or use the donate button to the right. If you are planning to join us at Sakuracon, could you email me as well so I can keep track so we make sure we don’t miss anyone?

Cheers

Not Enough, Never Enough…

Go ahead and fill in the blank after enough. There are many words that will do. In my case I will just look at the three that I feel are having the biggest impact on our reality.

Help or Assistance

From the medical community we get delays and excuses, “You are too complicated. It’s not my area. I just feel we need to run more tests before I can sign off on anything.” No effort is made to address symptoms or provide for basic relief from pain, anemia or a hundred other things that detract from quality of life and therefore from quantity of live.

From the caregiver agency we get told, “This is all the hours you are allowed. Family has to fill in for the rest of your needs.” The fact that there isn’t an extended family available to help doesn’t matter. There are two of us in this family who are regularly here helping. Linda provides the majority of care as she also works full time. I come on weekends and do what I can to help Beth and give Linda a chance to have some non-caregiver time. The non-caregiver time for Linda often doesn’t work out as it takes both of us to care for Beth.

Money

If we had enough money we could have taken Beth to specialists early on in this illness and possibly have some treatments and diagnosis. If we had enough money we could provide a more disability friendly home environment. If we had enough money we could have all the hours of quality care giving we need. If we had enough money we could make more dreams realities and have more moments of joy. If we had enough money Linda and I could be on leaves of absence to be with Beth.

Time

There is never enough time. There’s not enough time to just spend together. There’s not enough time to help Beth complete tasks she wants to do. There’s not enough time outside of work when I can be here. There’s not enough time to know this amazing person. There’s not enough time to not feel constantly pressed for time and resentful of things/circumstances that use what time there is. There is never enough time for Linda and Beth to just be together. No matter how much time there is, it is never enough.

Flowers of Hawaii - Part 2

This entry will have plants and trees - with and without flowers - real and imaginary!

Beth took this photo at sunset at Waikiki Beach. The banyan tree was pretty common around Hawaii. This one was huge. In the town of Hilo (near where we stayed on the Big Island) they had famous people plant banyan trees - Mark Twain being one. I think there is a tree there that started as a cutting from a cutting from the tree Buddha supposedly planted back in the 6th Century BC.

But back to the island of Oahu... the next morning we went to the Byodo-Inn temple, which was a replica of a famous Japanese temple. To reach the temple we had to go through a cemetary. Along the way we stopped by this egret perched on flowering bushes who was so close we could have reached out and touched.On the temple grounds we found mini bamboo forests. This particular forest intrigued me, but it was the sign which caught my attention. Okay, I admit, I have a weird sense of humour. But really, wet floor? I never considered grass to be a floor, nor needing a sign.I enjoyed playing with the sepa setting on my camera. I thought it made the bamboo forest seem even more exotic.On the Big Island, between the tide pools and the evening hike to see the lava flowing, we stopped at the Lava Tree State Park. There was a lot of greenery.Here you can see the chasms created during an eruption in 1790.But the lava trees were what I had come for. Lava trees form when flast flowing pahoehoe lava encounters wet 'ohi'a trees. As the flow drains away, it leaves a thick coating around the dying tree. So really, you aren't looking at trees, but what formed around the tree. The trees themselves died long ago. In this picture you can see two small trees and around four stumps.Here is a bird's eye view of where a tree used to be. I'm not sure what these plants are. The yellow 'flowers' reminded me of bullrushes. Any ideas on what this one is called?

I don't have names for the rest of these flowers. Please jump right in if you do! I'm not all that knowledgeable about plant names, but this reminded me of a morning glory. This was a delicate little purple flower. I much prefer large, fat flowers to tiny.
This red flower looked like it was growing horns!
My guess for this one would be burning or flaming something or other.These cut flowers we found at the market. They grow in the wild in Hawaii. Still hard to believe I was in such an exotic place that grew these flowers and I didn't have to visit a florist to see them. There's a Chinese couple who have a flower shop 2 blocks from where we live in Victoria. I often stop by to pick up a little boquet of flowers for Beth to look at during the day while I'm at work. They have the best selection. When I was in the shop last week I saw they had grown a number of orchids like these purple and white ones. Each plant had one orchid stem with a handful of flowers. And each plant was about $35. I never asked how much they were at the market in Hawaii. Probably a couple of bucks as there was a great supply of them.One of my regrets is not getting to the market earlier in the trip to buy lots of exotic fruit. I'm not very adventurous when it comes to eating, but did try a fresh pineapple (I could smell them from about 20 feet away), star fruit (the sour variety our driver in the Waipio Valley picked for us) and papaya. The market had huge papaya's 4/$1. I found some in our local grocery store the other week and they were about $4 for 1. The papaya tasted okay, but I think I'd stick with the pineapple. They will never taste or smell as good as the one we had in Hawaii.

Flowers of Hawaii - Part 1

When we first arrived on The Big Island we had a few hours to kill before our rental van was ready. While we waited we looked through the tourist literature and looked at places to visit. Beth found a botanical garden and said we should go there so “Linda can take pictures.” I told her I wasn’t into flowers so much that I needed to visit the botanical gardens.

Those words came back to haunt me as Beth and Cheryl had to wait while I took pictures of every type of flower I came across.

I was taking pictures of this pretty little plant which didn’t seem to mind all the sulphuric gases from the craters and steam vents.
These plants fared better than these bushes which had many dead and dying leaves and berries. The flower sure is pretty, and if memory serves me correctly there’s a myth about how Pele (the volcano god) turned a beautiful woman into the flower so that she could stay near her lover forever.

Flowers seemed to be everywhere. Orchids are wildflowers on the Big Island and grow in bushes along the side of the road like the one to our vacation rental home. So delicate.

Right outside our house were some hibiscus plants and there was only one flower on them while we were there. But what a beauty.

The hibiscus is the state flower of Hawaii. We saw two other types of hibiscus when we were in the Waipio Valley. These ones are called sleeping hibiscus because they don’t ever open.

There was also the more rare double hibiscus which our guide picked for us. The valley was the only place we ever saw these.

The Waipio Valley is where I was first introduced to ginger flowers. I never connected ginger root with big bushes with lovely scented flowers. We saw them in three colours: white, yellow and purple. The white had my favourite scent and was most appealing to me esthetically. I was so happy to find the hand lotion and some bars of soap in this scent. Thanks Beth for convincing me to buy the second bottle of lotion for ‘you’.

The yellow grew in big bunches and seemed a bit more spindly.

Then there were the purple ones which I didn’t even realize were ginger until I saw them in a store which was selling the roots.

Beth teases me about my exclamations when I find things growing or living ‘in the wild’ when the only place I’ve ever seen them before is in stores or conservatories. This applied to the flowers and also the fish I saw in the tidepools. I’ve seen these leaves in the conservatory back home in Winnipeg but didn’t know what they were.

Turns out they are wild tarot – and not edible like the domesticated tarot which is grown a lot in the Waipio Valley.

Speaking of flowers which are bad for you, the valley also has Angel Trumpets.

They sound, well… angelic but are anything but. They are very poisonous and if you touch them you really need to wash your hands and anything else that got in contact with them.

Here are a few other exotic looking flowers we found in the valley – of which I have no names for…

Please let me know the names if you happen to know what they are. This one is really strange and kind of gives me the creeps.
These are about half the flower photos. Will post the others on another day. Looking over the photos I took, I guess I was more ‘into’ flowers that I thought.

Making the Dream Reality

It is finally happening… plans are falling into place and we are going to Hawaii in a few months! I normally plan vacations pretty thoroughly but this time there are more considerations as Linda and I also plan for Beth’s needs. I find myself making contingency plans to prepare for any breathing problems Beth will have when we go up Mauna Kea (13,000 feet in elevation). I surf the internet looking for all the disability friendly sight seeing opportunites on the Big Island. I have researched possible options which would allow Beth to snorkel with us. I make and remake packing lists to be sure nothing important is forgotten. I am looking forward to this trip and will cherish every moment and every memory.

On a weekly basis I see Beth grow weaker. I see her systems seemingly fail randomly and sometimes, just as randomly, begin functioning again. I am there with Linda as the pain steals her strength and her sanity. I watch as she uses sheer determination to push past the pain and LIVE rather than exist. I don’t have any idea how long it will be before Beth flies away. So, I work to build happy memories. I want Beth to know joy and love as much as possible. That’s why even when it seemed an impossible dream I started planning for the possibility of going to Hawaii.

Now that dream is coming together. We have our flights. We have most of our accommodations. We have a rental vehicle reserved. We are making lists of what we want to see. Linda and I are planning the budget to cover it all. We may eat a lot of peanut butter sandwiches before and during the vacation. We will certainly be stretched thin financially but, we will have the chance to make Hawaii memories with Beth and that is worth every sacrifice.

Elizabeth F. McClung needs you!!

In the past 18 months, over 300 people have asked to be part of the Postcard Project – requesting postcards for themselves or their loved ones. We send postcards to over 400 individuals.

Last week I sent an email to individuals we had email addresses for asking for their help. If you’ve received and responded to that email there’s no need for you to read further. This blog entry is intended to reach those people who have never given us email addresses or have changed their email addresses and haven’t let us know.

It’s hard to believe that it was only last year that Elizabeth started the Postcard Project. It was just going to be a one-time deal, sending postcards to any of her readers at Screw Bronze while we were in Japan for our grand adventure before Elizabeth’s health prevented further travels. Well, several thousand postcards later, she’s still at it.

Unfortunately, every few weeks a postcard is returned as the recipient has moved. I thought it was time to update our mailing list so that Beth’s postcards and the energy she put into creating them is not wasted.

The Postcard Project is a really important project for Beth. She’s intimately familiar with loneliness and wants to do her part to change the world, letting others know they are not alone. She does this with her postcards. At first she did it all on her own but as her health has steadily deteriorated she has needed more and more assistance. In fact, there are weeks where she doesn’t get to stamp or sticker at all, just matching cards to people and writing all the comments. But she’s adamant about her motto – no one gets left behind! And if that means she works through the night, or falls over when she’s putting her weight behind some of the larger animal stamps, so be it.

Now this kind of freaks me out, to put it mildly. And I struggle between supporting Beth with her dreams of helping others and trying to put a stop to the dream because of the cost to her health. But I know stopping the project has an emotional cost – the postcards are Beth’s way of reaching out to others – and stopping the project would leave a gaping hole in her ‘community’ and feeling of self-worth as a human being.

So, I have a couple of favours to ask…

My first request is for you to contact me to let me know what you thought of the postcards, whether they have made a difference in your or your loved one’s life, and whether you/they would like to continue receiving them. Please be honest. If they brighten your day or your week we want to keep sending them to you. If they’re about as interesting as the other stuff in your mailbox, please tell us that too, so we can take you off the list and help conserve Beth’s energy.

Send an email to me at Linda.mcclung at shaw.ca or leave a comment here. If we don’t hear from you by August 15, 2009 we will remove your name from the list, assuming our information is out of date or that you do not want to receive further postcards.

I want to stress again that Beth really wants to send you postcards if you still want them. Don’t feel guilty about receiving them if they make a difference to you. You’re the one we really want to reach. It’s just that we don’t hear back from most people so have no idea how they are received. And I’m honest enough to admit that I sometimes wonder what’s the point and wish Beth would spend her time elsewhere.

But reading the responses from last week’s email, my faith in the recipients has been restored. The comments reinforced the difference that Beth’s postcards have made in people’s lives. They’ve inspired me to give Beth more help with the cards and less negativity. I’m also going to compile many of the positive comments into a word document that Beth can turn to time and time again when she is feeling alone and of little value.

My second request is that, if you are able, please reciprocate and send Elizabeth a postcard or note back. Her personal mail has gone down to a slow dribble and she’s feeling the loneliness of being indoors and alone most of the time. Receiving mail from you would really keep her spirits up. We put return address labels on the postcards, but I’ve included our post office address in case you may have misplaced your cards.

Elizabeth McClung
PO Box 2560
Port Angeles, WA 98362
USA

Thanks for your time and I look forward to hearing from you.